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Posts posted by Agnes26

  1. 1. How long were you there? 3 weeks

    2. Where did you stay? 1 week RMDH/2 week at private condo

    3. Are you with your child during therapies? Yes

    4. Is it a full day (9am to 5pm)? No. Just one hour.

    5. Was there therapy over the weekend? Nope

    6. How did your child feel about the process? Reluctant at first, but after a few days, after she warmed up to Dr. Rahman and realized it was helping, she was totally on board.

    7. Did you meet with Dr. Storch? Dr. Murphy? Dr. Rahman for ERP and consulted with Dr. Murphy.

    8. Costs at USF? Don't know. We had met our deductible, so it was covered 100 percent. Dr. Storch will tell you what out of pocket costs are. He's great.

    93. Would you recommend doing this? ABSOLUTELY. The best thing we've ever done. It gave me my DD back.


    @ DCMom. Wasn't Dr. Rahman the best? I wanted to pack him in my suitcase and bring him home.

  2. My daughter is recovering and does go to school. Occasionally, she will flare in social situations. I'm pretty sure it's because there's a strep carrier present. It seems to happen around the same people. She becomes hypermotoric, nonsensical and sometimes emotionally irrational/angry. There is no teaching her how to handle this because I truly believe she is out of her mind when this is happening. It stops soon after we remove her from the situation. Not sure if this is what's happening with your child, but perhaps keep tabs on whose around and see if there are any patterns to when the behavior happens.

  3. We're about 10 days into Influenza A. DD, DH and I all swabbed positive. DD is on Augmentin and has been for the past six months. So far, she seems ok. She did have one really rough day were her OCD seemed to come back (clothing refusal + checking/reassurance), but that went away. We were doing ibuprofen. I have no idea if that helped. I've attempted to contact Dr. Murphy, our doctor, without much success. Apparently, she doesn't answer e-mails anymore + my phone call got returned by the nurse, who left me a vm to check with out pediatrician about Tamiflu. So, not helpful. I'm a little worried that the other shoe will drop in a week or so.

  4. My daughter has always had numerous complaints that everything hurts. Shoes can't be too tight, tags have to come out of all cloths, socks make her crazy, she can't wear blue jeans, brushing her hair causes major melt downs, the list goes on. I know many of you can relate to these issues. She also has a very low pain tolerance. Any small injury causes major crying. So my question is, has anyone found any sort of therapy of any method to help with these extreme sensitivities? I am so tired of fighting every morning just to get her hair brushed. It's crazy.




    This was my daughter. She was diagnosed with SPD three years ago. We did OT, Wilbarger, Sensory diet, etc. Nothing worked. Turns out her sensory defensiveness was actually "just right" OCD. ERP at FSU knocked it out.

  5. My daughter improved significantly on the 14-day trial of Augmentin (no steriod burst), but the day after the "trial" ended she started a backslide of epic proportions because she was, of course, being exposed to strep at school. To this day, I still don't understand why she was given such a short course of abx (and a wimpy dose at that!) and then left unprotected for another infection. I'd say if the dose of Augmentin didn't work, ask for a higher dose, and if that still doesn't work, try something else and try it for at least 30 days. We've had great success with Augmentin 600 ES. DD, 7, has been on it for about 4 months.

  6. Be aware that the first month on Augmentin may show a couple of social and behavioral set-backs. Hang in there and don't get discouraged if you see a few changes that might seem to be for the worse. Dr. B advised us to wait it out, then add a steroid taper. After 4 1/2 months on the Augmentin (with some prednisone thrown in after 2 mo on the Aug), DS went into full remission. It has been five months and still no OCD whatsoever. This certainly does not happen for everyone, but it did in DS's case. Also, get some Florastor and/or other probiotics if you don't already have them. The antibiotics kill all of the good bacteria in the gut and your child can get a C-Dif infection if you don't replenish. Hugs and hang in there - Suzanne


    Suzanne, this is encouraging. Can I ask what does of Augmentin your son is on. My DD7 is on 600 ES X 2 daily. She has been for about a month. The first two weeks were great. These past two have been horrible.


    Hope this plan works for you. I hadn't occurred to me to have Myco titers for my husband and I, so thanks for mentioning.

  7. I cancelled a bunch ofappts and that felt good! We did see a psych today though and I posted a new one about that. He was PANDAS friendly. DCMom,I like the idea of "doing and not talking" that you mentioned at Rothman. I wonder HOW this works when it is is intrusive thought type of OCD?


    This is what we're dealing with, too, so I've been wondering that myself.

  8. Wondering this myself. We've put off the start of school for another two months just to give DD7's immune system a break.


    From what our ped has told us, prophylaxis will perhaps prevent your DS from actively "catching" strep, but if his body is exposed to it, his immune system will likely step up antibody production nonetheless. This was the case with our DS.


    You can help him get through the exposure and reaction, though, with some daily ibuprofen and other anti-inflammatory aids (presuming he doesn't have an adverse reaction to fish oil or other Omega 3's). In our experience, the "secondary exposure" response is shorter-lived than is the response to the full-on illness/infection.


    More good news is that, at your DS's age and middle school years, incidences of strep will begin to wane a bit as compared to the elementary school years. There tends to be more herd immunity by that age.


    So is this what's described as a "flare?" DD has ONE playmate that she had been seeing since this whole thing started. I began to notice that the day after they played together, DD was a basketcase. All her symptoms were intensified. DD has not seen that child for a week. And it's been a REALLY good week.


    This entire illness is the most frustrating I have ever experienced. Just when you think things are moving in the right direction, it crashes on you..





    We did not make the start of school two weeks ago. DD will have homebound services until October, at which point her tutor will also be in the classroom to help transition her back in.

  10. I would get blood work done if I were you. I was also a chronic Strep kid and it is believed that I had "mild" PANDAS as a child as well, although back then it was not a diagnosis. Anyway, had my tonsils out at age 17. I am now 48 and have had 2-3 + Strep cultures when My son, age 5 has been infected. We pass it back and fourth. Recently, I had titers drawn after another "cold" and they were abnormal. Dr. B put me on 30 days of Augmentin and my son showed great improvement during that period of time. I suggest that you get your son's PANDAS specialist to make you a patient as well, so that your situation can be approached from that angle...good luck and hang in there. Keep fighting the good fight!


    Thanks for the advice. I will call to have blood work done.

  11. DD7 has PANDAS diagnosis and has had IVIG. As a child, I had strep like it was my job. Many, many times a year. I had scarlet fever in grade school. As a teen, I had pericarditis due to a missed strep infection. Honestly, should have probably had my tonsils out. As an adult, never got strep until my daughter went to kindergarten. Have had it three times in 1.5 years.


    My question is this: Would it make sense to have my tonsils out now? I've had several cultures, all come back negative, but is it possible that I have strep hanging out in the recesses of my tonsils unreachable by a swab?

  12. fyi...I don't think you can take antacids and Azithromycin so you wouldn't want the Pepcid Complete if taking that antibiotic.




    We took DD off Zyrtec for two days and the wheels came off. Emotional lability and hostility returned full force. Put her back on it, and a half hour later she was sweet as pie.


    Does anyone know if Pepcid is available in chewables. I can only find a generic chewable pepcid/tums combo. Not sure if the antacids would hurt, but I'd rather not give anything extra.


    She's on Augmentin, but that was a worry. Thanks. Definitely don't want it interfering with abx! Looks like we'll just stick to Zyrtec.


    [*]At the Q&A session the panel (including Dr. Swedo, Dr. Latimer and Dr. Murphy) indicated that seasonal allergies and similar histaminergic responses in our kids can result in an autoimmune response that is fairly indistinguishable from the way they react to other "invaders." Swedo recommended both H1 and H2 blockers for combatting that response.



    This is intriguing to me. DD has terrible seasonal allergies right now. Could this be why 5 weeks post IVIG, OCD is unrelenting?


    Thanks for posting this information!

  14. My dd is 5 weeks post IVIG. While her other symptoms like emotional lability and night waking have improved greatly, OCD is unrelenting. She's had a few really good days here and there, but nothing consistent nor lasting. I'm losing hope that this will help her and school starts Monday.

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